Chronic Lymphocytic Leukemia (CLL)

Condition Basics

What is chronic lymphocytic leukemia (CLL)?

Chronic lymphocytic leukemia (CLL) is a cancer of the blood cells. It's a type of leukemia in which the bone marrow makes too many young white blood cells called lymphocytes.

In CLL, some of these lymphocytes grow abnormally and don't mature or die off as they should. Instead, they become leukemia cells. These leukemia cells slowly crowd out normal blood cells in the blood, bone marrow, lymph nodes, and spleen.

CLL is also called chronic lymphoblastic leukemia. It usually gets worse slowly.

What causes it?

Experts don't know what causes leukemia in most people. But they think that most leukemia happens because of things in the environment and in a person's genes.

Some things may increase the risk, such as having certain genetic conditions or being exposed to large amounts of radiation or certain chemicals.

What are the symptoms?

CLL often doesn't cause any symptoms. When it does, they may include swollen lymph nodes; fatigue; a feeling of fullness below the ribs; weight loss for no clear reason; and fever, chills, and night sweats. If it gets worse, it may cause anemia, infections, and easy bruising or bleeding.

How is it diagnosed?

Your doctor will ask about your past health and do a physical exam. You'll have blood tests. If the results point to leukemia, the doctor may do other tests to learn more about the disease. For example, you'll have genetic tests. You may have imaging tests or a bone marrow biopsy.

How is CLL treated?

Treatments for CLL include targeted therapy, chemotherapy and immunotherapy (chemoimmunotherapy), and stem cell transplants. But treatment isn't always needed right away. And if you don't respond to treatment, or if the leukemia comes back, your doctor will discuss your options for more treatment. Or your doctor may recommend that you join a clinical trial.

When to Call a Doctor

Call 911 anytime you think you may need emergency care. For example, call if:

• You passed out (lost consciousness).

Call your doctor if you have symptoms. For example, call if:

• You have swollen glands in your armpits, groin, or neck.
• You have abnormal bleeding. For example, you have frequent nosebleeds, bleeding from the gums or rectum, more frequent bruising, or very heavy menstrual bleeding.
• You keep having fevers.
• You have night sweats.
• You have bone pain.
• You lose your appetite or lose weight without trying.
• You have swelling and pain in your belly.
• You have a new rash or skin changes.

If you have been diagnosed with cancer, be sure to follow your doctor's instructions about calling when you have problems, new symptoms, or symptoms that get worse.

Examinations and Tests

Your doctor will ask about your past health, your family history, and any symptoms you've had. The doctor will do a physical exam and check for swollen lymph nodes or an enlarged spleen or liver.

You'll have tests, which may include:

• Lab tests, including a complete blood count.
• Imaging tests, such as a CT scan.
• Tissue tests, such as a bone marrow aspiration and biopsy.
• Genetic tests that look for changes in your genes and chromosomes.
• Heart tests to check how well your heart works, such as an echocardiogram.

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Treatment Overview

CLL isn't always treated right away. Treatment choices for CLL include:

When CLL doesn't respond to treatment, or if it comes back after you haven't had symptoms for a while, your doctor will discuss your options for more treatment. Or your doctor may recommend that you join a clinical trial for new treatments.

When you have CLL, your body isn't able to fight infections very well. You and your doctor need to watch for any signs of infections, such as pneumonia or yeast infections. Early treatment of these and other infections will help you live longer. You can sometimes prevent certain infections or keep from getting very sick by staying up to date on your COVID-19 vaccines and getting an influenza (flu) vaccine or a pneumonia vaccine. Your doctor also may give you antibiotics to prevent infection while you're being treated for leukemia.

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Supportive Care

Hospice palliative care is a type of care for people who have a serious illness. It's different from care to cure your illness, called curative treatment. Hospice palliative care provides an extra layer of support that can improve your quality of life—not just in your body, but also in your mind and spirit. Sometimes hospice palliative care is combined with curative treatment.

The kind of care you get depends on what you need. Your goals guide your care. You can get both hospice palliative care and care to treat your illness. You don't have to choose one or the other.

Hospice palliative care can help you manage symptoms, pain, or side effects from treatment. It may help you and those close to you better understand your illness, talk more openly about your feelings, or decide what treatment you want or don't want. It can also help you communicate better with your doctors, nurses, family, and friends.

End-of-life care

It can be hard to live with an illness that cannot be cured. But if your health is getting worse, you may want to make decisions about end-of-life care. Planning for the end of your life does not mean that you are giving up. It is a way to make sure that your wishes are met. Clearly stating your wishes can make it easier for your loved ones. Making plans while you are still able may also ease your mind and make your final days less stressful and more meaningful.

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Self-Care

• Take your medicines exactly as prescribed. Call your doctor or nurse advice line if you think you are having a problem with your medicine.
• Eat healthy food. If you do not feel like eating, try to eat food that has protein and extra calories to keep up your strength and prevent weight loss.
• Get some physical activity every day, but do not get too tired.
• Get enough sleep, and take time to do things you enjoy. This can help reduce stress.
• Think about joining a support group. Or discuss your concerns with your doctor or a counsellor.
• If you are vomiting or have diarrhea:
  • Drink plenty of fluids to prevent dehydration. Choose water and other clear liquids. If you have kidney, heart, or liver disease and have to limit fluids, talk with your doctor before you increase the amount of fluids you drink.
  • When you are able to eat, try clear soups, mild foods, and liquids until all symptoms are gone for 12 to 48 hours. Other good choices include dry toast, crackers, cooked cereal, and gelatin dessert, such as Jell-O.
• Avoid infections such as COVID-19, colds, and influenza (flu). Wash your hands often. Get a pneumococcal vaccine. If you have had one before, ask your doctor whether you need another dose. Get a flu vaccine every year. Stay up to date on your COVID-19 vaccines.
• Do not smoke. If you need help quitting, talk to your doctor about stop-smoking programs and medicines. These can increase your chances of quitting for good.

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Complementary Treatments

Some people use complementary therapies along with medical treatment. They may help relieve the symptoms and stress of cancer or the side effects of cancer treatment. Therapies that may be helpful include:

• Acupuncture to relieve pain and other symptoms.
• Meditation or yoga to relieve stress.
• Massage and biofeedback to reduce pain and tension.
• Breathing exercises to help you relax.

Talk with your doctor about any of these options you would like to try. And let your doctor know if you are already using any complementary therapies. They are not meant to take the place of standard medical treatment. But they may help you feel better and cope better with treatment.

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Getting Support

Relationships take on new importance when you're faced with cancer. Your family and friends can help support you. You may also want to look beyond those who are close to you.

• Reach out to your family and friends.

  Remember that the people around you want to support you, and asking for help isn't a sign of weakness.

• Tell them how they can help.

  Your friends and family want to help, but some of them may not know what to do. It may help to make a list. For example, you might ask them to:

  • Run errands or pick up kids.
  • Deliver meals or groceries to your home.
  • Drive you to appointments.
  • Go to doctor visits with you and take notes.
• Look for help from other sources.

  Places to turn for support include:

  Counselling.

  Counselling can help you cope with cancer and the effect cancer is having on your life. Different types of counselling include family therapy, couples therapy, group counselling, and individual counselling.

  Your health care team.

  Your team should be supportive. Be open and honest about your fears and concerns. Your doctor can help you get the right medical treatments, including counselling.

  Spiritual or religious groups.

  These groups can provide comfort and may be able to help you find counselling or other social support services.

  Social groups.

  Social groups can help you meet new people and get involved in activities you enjoy. Focus on activities that bring you comfort, such as spending time outdoors or being with children.

  A cancer support group.

  Cancer support groups offer support and practical advice. You can hear others talk about:

  • What it's like to live with cancer.
  • Practical ways to manage your cancer treatment and its side effects.
  • Ways to cope with your illness.

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